Did anyone get thrush prior to Behçet’s diagno... - Behçet's UK

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Did anyone get thrush prior to Behçet’s diagnosis?

Colleen6082 profile image
11 Replies

I’m in the Behçet’s pre official diagnosis stage and I had a stubborn case of thrush on my tongue for six months last year which also was made worse from antibiotics for an infection on my face which I just thought was acne under the skin. Anyway, it finally went away after putting probiotics on my tongue nightly for six weeks. I had a flare up of symptoms last week which I would say is from stress so my doctor gave me prednisone for five days. Well after 24 hours of being on prednisone my thrush is back on my tongue. I’m hiv negative by the way but really wondering what’s going on with my immune system.

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Colleen6082
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11 Replies
rooser1 profile image
rooser1

YASSS LETS TALK ABOUT THRUSH

Ive had it foreverrrrrrr. negative everything here too. What ive learned over my almost 15 year journey with behcets, and thrush being one of the first and ongoing and VERY persistant symptoms... it takes a very long time to go away. Years.

thrush so bad, my mouth bleed when eating. The burning was ridic.

So let's cut to the chase- Im healthy AF now. Here's what I did.

Nystatin oh so many times.

clotrimazole lozenges 4-6 daily

fluconazole 100mg, twice daily for 3 months

chewable probiotics

coconut oil pulling

Here's what worked:

Gentian Violet on the tongue then-

Candida Diet for 9 months.

Nexabiotic 23 strain for a year, coupled with NOW acidophilus 2Bill CFU, 2 caps daily.

Transitioned into low carb, remained SUCROSE FREE (turns out i am intolerant)

Now I remain low carb/keto (still sucrose free) I just started working in some low sugar fruit after 5 years and we are so far so good!

all my meals are posted on IG- @bitterbiologist

Diet is that turned it around for me. Ive had thrush since high school, even before my first flare at 18...im surprised not one doctor was like UHHHH- this doesnt make sense.

Also i only had one vaginal yeast infection and it was went I took flagyl. but the thrush... the f***** thrush.

Im more than happy to go over other things with you- but figured I start there.

xoxo

Colleen6082 profile image
Colleen6082 in reply to rooser1

Thank you so much for all the information!!! I’m going to definitely to tackle this with diet and supplements. My previous doctor just kept giving me nystatin which didn’t help. It’s so frustrating and part of me wonders if I have an immune deficiency because of the thrush but if my immune system is in overdrive then maybe it’s overworked and that’s why the thrush is happening? I wish I understood why this is happening. I was going to ask my doctor to test my adrenal glands to see if they’re burnt out from all the stress I’ve been under and not coping with ideally. I’m going to try to follow you, is that twitter?

Colleen6082 profile image
Colleen6082 in reply to Colleen6082

That’s instagram I think (IG) lol

rooser1 profile image
rooser1 in reply to Colleen6082

its IG. yeah i was confused too bc with behcets or any autoimmune really, the immune system is OVER active, so overly attacking healthy tissue. Thrush is a thing with immunocompromised, like young and elderly. its an odd thing for sure. I sort of just tied it in with my sucrose intolerance, bc honestly the two started together. But really, sugarfree is the way to be. such a simple (i know its easier said than done) fix. Meat, fats, veggies. thats it. i still take acidophilus to this day though. its good to have in general.

Blearyeyed profile image
Blearyeyed

Hi,

You had given me an answer to my query and I have just noticed your previous post.

One of the symptoms of my last two flare ups was a very aggressive bout of thrush on my tongue, I also got thrush and candida in other parts of my body and had to have antifungals for a month.

I finally got control of this and have found some relief from my other intestinal symptoms during flare ups by eating a diet with no gluten, processed sugar or dairy for a number of weeks , but eating probiotic yoghurt everyday with a little Manuka honey and ginger.

I also drank no coffee ( it can have fungus in it),and drank green or ginger tea, I ate no mushrooms, peanuts, peas or corn and cut down on high carbs.

It is quite restrictive but it does help reduce the pain and the length of a flare up coupled with taking an omega complex capsule, turmeric and garlic each day it gets the thrush under control and helps with other symptoms.

I will say , I am no health food junkie, I like cake and proper nosh , but over the years of suffering many symptoms I have found managing my food intake and environment during a flare up and exercising when I am in remission has benefitted alot and helped to reduce the pain and length of the flare ups I have had.

Hope this helps and good luck.

Colleen6082 profile image
Colleen6082 in reply to Blearyeyed

Thank you for your comments and suggestions. I’ve heard about some diet and stress triggers so I’m going to try to educate myself on an autoimmune diet and also the Candida diet which I have some experience in. My next paycheque I’m going to go to a health food store and get some supplements and order some autoimmune wellness books online. I’ve heard that leaky gut syndrome can cause or make autoimmune diseases worse so I’m going to research that as well. I was also wondering about possible adrenal fatigue from stress contributing to my thrush. I’ll ask my doctor about that but I know the medical community doesn’t always know about these things the way naturopathic doctors do. I guess knowledge is power and I’ve heard some people say that they keep a symptom diary to keep track of how they’re doing and feeling and I could include a food and supplement diary with that to try to isolate triggers, etc. Good luck to you as well.

doileyqueen profile image
doileyqueen in reply to Blearyeyed

Hi thanks for posting I have had possible BS for many years and have given up with my GP. I experience burning and pain most days on my tongue and wonder if it could be thrush, I take a few supplements have bio yogurt and exercise which help other symptoms and adjust life accordingly. I do eat a lot of fruit and the odd biscuit or four so will try a new approach Thanks

Colleen6082 profile image
Colleen6082 in reply to doileyqueen

Hi doileyqueen, is your tongue white? Thrush is usually a white coating on your tongue that you can’t scrape off but it can also be red I think and be sore. It can also feel like your tongue is dry and cracked. So it could be thrush or could be from the Behcets? My taste buds on the tip of my tongue have been red and inflamed for almost two weeks and that makes me think I’m allergic to something but I can’t figure out what it could be. Or I’m wondering if that’s just the Behcets. It’s so hard to know what exactly is going on.

doileyqueen profile image
doileyqueen in reply to Colleen6082

Hi not sure about the thrush but I do have tiny white spots down the side of my tongue. Last time I went to my GP I had a huge ulcer on my tongue, he wanted me to have a biopsy but said it could takes weeks for an appointment, so I declined. I also have fibromyalgia so I'm thinking its all down to one or the other. Last time I felt realy bad I cut out sugar and flour, after a month I felt great, it is hard though.

My daughter had thrush for a while and ended up self medicating herself to get rid of it. She took garlic capsules, bio yogurt and had quite a restricted diet but it worked for her. Have you tried Difflam mouthwash I find it takes the edge of the burning. Hope you feel better soon.

Colleen6082 profile image
Colleen6082 in reply to doileyqueen

I’ve never tried Difflam mouthwash. I’m waiting to see the rheumatologist at the end of June for a diagnosis. My new family doctor (previous doctor retired) said that he thinks I have Behcets. This was only three weeks ago. He put me on prednisone for five days when I was in a flare but I haven’t been given any other treatment yet as I don’t have an official diagnosis yet. What I did for my thrush which lasted for six months last year after three failed attempts with nystatin (anti fungal) was I opened up probiotic capsules and put them on my tongue at bedtime for six weeks. You could try that to see if that helps. I bought the 100 billion probiotics. They’re high potency and expensive but my thrush was really stubborn so I wanted to really stomp it out. Good luck to you.

Irish-gal profile image
Irish-gal

Thank you all for sharing. I had a behcets flare up last year...( one. Of many) and a cheat infection. I wasn't on and injections at this stage, and the amtibis and steriodz caused my thrush. However I didn't realise until 5 days later. Then I got the cream for the thrush, and the 'downstairz' ulcers didn't like the thrush cream... well lads... I thought I was going to die... I'm so pleased to be able to come to here and enagse with you all- thankfully.

Wishing you and everyone the very best. Xx

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